CARRBORO -
Fifteen years ago, Judi Chatowsky's younger brother Matt's spine was crushed by a 1,200 pound horse.
Two years later, at 30, Chatowsky found herself having an MRI at UNC Hospital's emergency room after her left side went numb. Later she would be shown scans of multiple lesions on her brain and spine.
Chatowsky, now 43, has multiple sclerosis, a chronic inflammatory disease of the central nervous system. Tall, with dark hair and steady gaze, her appearance doesn't hint at the degenerative disease wreaking havoc on her neurological system.
In an essay, "What the People Don't Know," published in an anthology called "Voices of Multiple Sclerosis" by Lachance Publishing, Chatowsky writes:
"The ends of my nerves are frayed, like dried electrical tape around a wire; a shoelace without a plastic tip. My brother's nerves are frayed, smashed, squished, sliced by bone shard, mashed into his spinal chord at T-12.""My essay is about living with this transient, often invisible, but thoroughly frustrating disease," says Chatowsky, "and how I find support in my relationship with my brother, who is in a wheelchair due to a horse accident."
"The people," the reference in the book title that Chatowsky repeats in her essay, is code. She uses it with her brother, "in situations where someone, or everyone, is oblivious to the needs of the handicapped."
A few years after her diagnosis, Chatowsky began attending writing workshops led by Carol Henderson, a columnist for the Chapel Hill News.
"In the beginning Judi was writing stories about her childhood and coming from this enormous Catholic family," says Henderson. "When she began writing about MS, Judi found a voice that's direct and spare. She brings the reader right in."
Fourth in a family of nine active and athletic siblings, Chatowsky grew up in Rhode Island, moving to Florida as a teen. In her late 20s, she was planning on getting her MFA, but health tremors -- like a loss of balance and occasional numbness, felt like warnings.
"Instinctively something was telling me this was not the time to go to grad school without health insurance or security," Chatowsky says.
Months before she got a job fundraising and overseeing special projects at UNC's Kenan-Flagler Business School, Chatowsky lost her balance for 10 days. A vertigo specialist checked her out, but no other symptoms arose, so Chatowsky pushed back the niggling worry and tackled her new job.
Less than a year later, Chatowsky was viewing images from her MRI scan.
Each week, more than 200 people are diagnosed with multiple sclerosis in the United States. It affects twice as many women as men and has no known cure.
Chatowsky spent five years with the business school before she used all her sick and vacation time.
When Chatowsky has a flare-up, she is bedridden. Stress makes things worse. She had one of her worst flares last Thanksgiving as she and her husband were discussing separating; this spring, they decided to divorce.
Chatowsky has a 6-year-old son, Jonah. MS will often go into remission during pregnancy, and it did for her. She calls her son a gift, and a reason to take it one day at a time.
"I was very nervous about telling him I had MS," says Chatowsky who told her son she had a medical condition when he was 5.
"The hardest part was telling him that I was sick." She says.
Chatowsky is managing now without drugs and has altered her lifestyle to support the rest she needs. "I have to nap, and be in bed by 8 p.m. I can't over-schedule and like a small child, I must make sure I'm eating and have the proper fuel before I crash," she said.
Tapping into a community of others dealing with MS through writing has provided solace, as Chatowsky manages day-to-day life with her disease, especially as she lives with the daily realization that things could shift, and turn for the worse.
"I think it's very useful for people to write about chronic conditions and their own grief; whatever is deeply in their minds all the time," says Henderson.
"Self-validation and acceptance are a daily struggle," Chatowsky writes.
A chronic illness can be very isolating, she says, all the more reason to share her story.
"It becomes very important to share one's experience, like I did with this collection that features 33 individual stories, so that those who are struggling know they are not alone."